Topic : Raising a Special Needs Child

I am sorry you are having so many problems getting your son correctly diagnosed and I completely understand your pain and frustration. The longer your son goes undiagnosed, the more time you lose in getting the intervention he needs, if he is indeed Asperger's. 

It is generally not uncommon for an Aspie to have a comorbid, but to have several is highly unlikely. My daughter has AS with comorbid ADHD. HOWEVER, many symptoms of other disorders may present in Asperger's and be misdiagnosed by someone who is unfamiliar with AS. I would suggest your ask your ex to take your son to a neuropsychologist or neuropsychiatrist and ASK whoever it is if they have qualitative experience with autism spectrum disorders. 

My daughter has had symptoms since the age of two, followed by a very frustrating 8 years of doctor after doctor after psychologist, all of whom said nothing was wrong with her. Then, 2003 brought several misdiagnoses. It was only in September of this year that she was accurately diagnosed and I am still trying to get interventions in place while doing what I can at home to help her. 

If you have any questions about where you might take your son, go to the OASIS website and make a post. One of the girls can get you information on specialists in the state in which your son resides. 

I have to go pick my daughter up from school. I will check the board later to see if you have questions. 

Another piece of information that might be useful is that 99.9% of children suffering from Asperger's have social skills problems, or what language/speech therapists call "pragmatics". If you believe your son may suffer from Asperger's, have him tested by a speech/language therapist in PRAGMATICS. This test is more in depth than the average language/speech test given to children and, unfortunately, many AS children can pass the lesser speech tests so they slip through the cracks. It is usually the pragmatics where the AS is "proven" or tossed as a possible diagnosis. Social skills deficits are the most common symptom of all AS children from the research studies I have seen. The DSM-IV R(I think) has a list of criterion that children must meet to be "Aspie's". Be careful of shrinks who are specialists in one area of the learning disabilities (such as ADHD, bipolar, schizophrenic, etc.) because that is what your child will have. If you can locate a university close to your son that has a psychology department that does developmental disabilities' studies, that might be a good place to start. 

One thing to remember is that not all AS children suffer the same symptoms/behaviors and severity is also a question. My daughter does not have the severity of other children with AS. I will tell you about a few of my daughter's but your son may or may not have other symptoms that are AS that my daughter does not have.  

Other symptoms you might inquire about are motor tics. For instance, my daughter will put the thumb and middle finger of her left hand together and move her left hand back and forth spasmodically and become visually fixated on that hand while jerking her body spasmodically. Another motor tic is when she rises on her tip-toes, paces back and forth in a straight line, rocking her body spasmodically and, again, becomes visually fixated on it. 

My daughter is very concrete in her thinking. She often does not understand idioms. A funnier one is the day I was speaking to another adult about doing something she feared and I said "Sometimes you have to kick the dog that bit you." (This is a fairly common idiom in Arkansas, maybe the south.) My daughter was absolutely horrified and asked me why I would kick a dog. I then had to explain to her what I meant. Sarcasm is often lost on her when it is used by other people. Oddly enough, she gets most of my sarcasm because I tend to be a very sarcastic person. 

She has "meltdowns" or "tantrums" if she encounters a situation that overstimulates one or more of her senses. She is hypersensitive with smell. She cannot play video games or play for extended periods of time physically because she becomes overstimulated and loses control of herself. She has accidentally hurt other children before (and me) when this happens. But to tell her to sit down for a while WILL bring on a meltdown. When she is in the middle of a meltdown, I have learned to not try to reason with her because it only makes it worse. She has already been sensorily overstimulated and more stimulation makes it worse. I just get her and leave wherever we are, no matter what. She cannot calm down until I remove her from the situation. 

My daughter talks constantly. And I mean literally. She is very detail-oriented, often giving me details that are completely irrelevant to the main point of the story, but if I interrupt her, she often has to start over. She frequently speaks in a monotone voice and still cannot grasp what a whisper is. I am a big picture person and details such as what color clothing a person was wearing or hairstyle often escapes me and I begin tuning out the chatter. But, most of the time amidst all of that detail, my daughter is actually getting around to telling me something I need to know. So, I have had to retrain myself to NOT tune her out when she launches into one of the "detail" stories. For instance, one day she began a commentary on her day at school by telling me about a little boy who got in trouble on the playground, what he had done, what he was wearing, where the duty teacher made him sit, etc. and then finally got around to the fact that two teens from the high school had been taking my daughter's entire class of the playground at lunch and NONE of the duty teachers knew until that day...four weeks AFTER they first began leaving the playground with the teens. 

She has no clue about personal space and stands too close to people when she talks to them. Well, actually she talks AT them. My daughter cannot read non-verbal clues and will talk about her latest fascination to anyone who will listen without allowing the other person to get a word in edgewise (this is called perseverative). 

I have talked to mothers of sons with AS and sometimes children with AS will react violently, they will climb about, shout, have angry outbursts in school and other situations and any attempt to calm them results in the same reaction as my daughter...it only escalates the situation. 

Hope this helps some. Don't forget the OASIS website for Asperger's. Angie can probably get you the names and phone numbers of people to call for help. 

SD 

I hate that your children have, or may have, Asperger's Syndrome, but it is nice to know that other parents out there understand they day-to-day struggle raising a child with a disorder. I am a single/divorced mom and have raised my daughter by myself (with the exception of a very brief interim marriage) for 10 years. 

After all the hassle I have had with this school for 5 years over my daughter, I have returned to school to pursue a degree as a School Psychology Specialist with an emphasis in autism/asperger's. If you can't beat them, join them. I can't change them from out here, so I will get on the inside and work from the inside out to bring awareness to at least one school district about this disorder. 

Because our children look so normal, many people just assume they are "bad" kids or have behavioral problems when they don't. I just wish someone, somewhere in this country would raise public awareness of this disorder so our children do not suffer so much.  

My daughter had such a difficult time last year, even with her teacher, that I pulled her from school the last two weeks and wrote a six page letter to the school principal and assistant principal letting them know that they had egregiously violated my daughter's civil rights (I also named specific teachers' names in the letter who had mistreated my child) and I was calling my state's attorney general, the state Department of Ed. and DHS. I was amazed at how quickly they were calling me, wanting me to come to the school to talk things over and get an IEP in place for my daughter that should have been there in 2003, even with the incorrect diagnosis. There is, of course, background info I haven't listed here. The point is, I let them know in no uncertain terms exactly what they had done and that I was not putting up with it. They had allowed my daughter to be bullied all year, even by the teacher, and then when she got fed up and struck back, they saw her because she wasn't as crafty as her tormentors, who kept their behavior under the radar. As a result, I was called to the school because the assistant principal threatened to expel her. When I found out what had really been happening, that is when I pulled her from school, wrote the letter and called the agencies. 

DO NOT LET THEM RUN OVER YOU. Schools will threaten and try their best to intimidate you into doing what they want, and they usually get away with it. Human nature is human nature: Intimidation works for them, so they keep doing it. Find out what your child's rights are (look at IDEA and FAPE and whatever state provisions you may have) and put it in writing to the school that you are not going to be quiet and they are not going to get away with unconscionable violations of your child's rights.  

Be careful in choosing your battles, though. If it isn't really worth fussing about, don't. When you become the mother who is at the school every day complaining about something, they will not take you as seriously. It is like the "nagging wife" syndrome and gets you nowhere fast and certainly doesn't help your child. 

BTW, check out the OASIS website, if you haven't already. It is a great online support for AS parents specifically and you can pick up some great information from the parents. 

Wish all of you the best! 

SD 

I am so sorry for your situation. It is really had raising these kids and to raise them as a step child relationship well I bow to you.  Frist of all I would ask for a new evaluation at his school.  I don't know what kind of costudy you have but I am pretty sure either perant can ask for a new evaluation because it is obvious that what they are doing with him at school is not working.  The school legally has to give him a new evaluation.  Then you can tell them that you are not stopping until they include the OC in his curriculum.  And if the mother moves away I would frist get some legal help there.  There may be a way to keep him in your area.  Please PLease read the perants rights you can get one at any school office.  Also you can usually request a perant advocate.  The school usually doesnt like to make it known they are available but they are.  Have them help navigate your system.   

       I would also look up what is known as play thereapy I have been to seminars where they taught it because it is so expensive to actually have a play therapist.  I had Dr. Richard Solomon He was wonderful he use to have a website I dont know if he does any more.  This has helped my kids more then anything.   

       If I had to hear Oh they will grow out of it one more time I swear I was the one who was going to through the tantrem.  Find a good doctor dont stop till you find one that will help.  Write any time I would be happy to help it gives me encouragement if I can help some one going through this.  I pray for the day when they can give us ansewers to why all these beautiful children have to go through this but I will tell you this the faster you get the right help the better things will get.  It will be night and day difference.  I challenge you to really find out what makes him tick what his limits are and where he can be pushed to do better and where he needs time.  Thank you I will be thinking about you Missy 

  We just got a letter for a IEP.The problem is that they sent it to his ex and her husband.His fathers name isn't even listed.That infuriates me,because he took his divorce documents to the school last year to make sure he was notified of everything concerning his son.This is part of the problem.We do have help from a lawyer now trying to keep her from moving.Now the lawyer will be notifeid that the school isn't following court order that both parents be notified about his education. 

  It is hard enough to get him what he needs,but the school is making it that much harder. 

   Thanks to all of you for your advice and thoughts!!! 

I am not so sure that homeschooling is the best alternative for either you or your son. Asperger's children need guided social interaction. The best possible resource would be a Therapeutic Day School, however, unless your school district is going to pay for this the tuitions are virtually impossible.

Your son wants very much to be 'normal.' He wants all the things that other kids have: friends, room to move, room to explore on his own. His interests and emotions are intense. He's bright, but his articulation appropriateness isn't on the mark. On top of this, he's impulsive. He can't see the other side because empathy (though he feels deep and genuine emotion) isn't easily the first thing accessed. All of this makes it hard, because his behavior makes it difficult in the presence of a typical classroom. And so you homeschool.

But you can't be the sun, the moon & the stars for your kid. And maybe you're frustrated too, and so the two of you become a toxic combination.

I'd urge to you seek the company of other parents who are going through a similar struggle. You have to know that you're not the only one going through this. They might have ideas of how to work with your public schools, how to get an accurate diagosis, finding a good social skills program, a good psychiatrist and a good psychologist just for you. (Yes, parents need to go through counseling too, because IT'S TOUGH).

An excellent resource for you is http://tonyattwood.com.au. This is Dr. Tony Attwood's site, and he's one of the top researchers in the world on Asperger's.

Yours, Calliegal

I'm glad you have her in counseling and that she's seeing a psychiatrist. You absolutely did the right thing.

Now breathe.

I'd urge you to get counseling for yourself. It's normal to be depressed under extreme circumstances, and it does you no good to have only your daughter in counseling while you wait in the lobby, afraid, scared, trying to be socially acceptable when you feel like screaming!

Keep making your circle bigger. Lots of people can help and will help if only you let them.

I can,t imagine what you are going through.  But  I was sexually abused as a child by a very close family member and again what has helped me the most surrounding myself with healthy people. Even when I did not want want too.  When I was a young teenager it was me against the world every one was out for something of their own( or so I thought) and I trusted no one.  I went to counseling but I was not honest so that did not work so I ran of and got married two weeks after I turned 18.  That did not work either.  I would really suggest that you make sure that even though the truth hurts and that she may believe no one cares about her even though they say they do that you remind her every day every minute no matter what no matter where you will always love her that she is a worthy person.  To open up and talk about the shame the pit of emptiness she feels about loosing a person so close to her.  Keep her in counseling no matter how long it takes she needs to know you will never let go and that there is a future and a good future for her.  Iwould say that maybe you should go to counceling too. A behavior therapist can be a great asset at these times to teach you how to deal with her. God be with you and your family. Missy.